Casey Urges Biden Administration to Address Hoarding Disorder in an Aging Nation

In letters to housing and health agencies, Casey calls attention to the problems caused by hoarding disorder and pushes administration to support affected older adults, families, and communities

Casey released report earlier this year detailing how hoarding behavior disproportionately affects older adults and how federal government should respond

Letters call on agencies to follow recommendations in Casey’s report, including by expanding access to treatment for the condition and training local officials on how to help afflicted individuals

Washington, D.C. - Today, U.S. Senator Bob Casey (D-PA), Chairman of the U.S. Senate Special Committee on Aging, sent letters to the U.S Departments of Health and Human Service (HHS) and Housing and Urban Development (HUD) urging the agencies to take steps to address issues caused by hoarding disorder, which affects approximately two percent of the American population and six percent of older adults. In the letters, Casey called attention to the array of risks that hoarding behavior poses to older adults, their families, and first responders. Earlier this year, Casey issued a report entitled “The Consequences of Clutter,” which detailed the implications of hoarding behavior for individuals, families, and communities as the American population gets older and set out a series of recommendations for how the federal government should respond. Casey’s letters to the agencies called for them to follow those recommendations, including by expanding access to treatment for the condition and training local officials on how to best help afflicted individuals.

Chairman Casey wrote, “Hoarding disorder disproportionately affects older adults, a population that is projected to grow significantly in coming years. As America ages, it can expect an increase in hoarding behavior, with consequences for older Americans and their families and communities…The federal government must be prepared to respond.”

Hoarding disorder is a serious mental health condition that causes people to accumulate more objects than they need. The disorder impacts roughly two percent of the general population, while it affects about six percent of those over the age of 70. Chairman Casey’s report found that hoarding disorder has serious consequences for older adults and communities around the Nation. For older adults, those consequences include health and safety risks, social isolation, eviction, and homelessness. For communities, those consequences include public health concerns, increased risk of fire, and dangers to emergency responders.

Local communities throughout the United States are already working to address cases of hoarding disorder, including through the formation of hoarding task forces to coordinate response efforts. Unfortunately, the resources available for local responses often do not correspond with the level of challenge communities are facing. Chairman Casey’s report issued a series of recommendations for how the federal government can increase support to communities that are contending with hoarding disorder. In the letters to the agencies, he urged them to follow those recommendations, including by expanding access to treatment for the condition, providing local officials with more extensive guidance and training to support afflicted individuals, and expanding the scope of tracking and research about how hoarding disorder is affecting individuals and communities Nationwide.

Read the full text of Casey’s letter to HUD here. Read the full text of Casey’s letter to HHS here or below:

The Honorable Xavier Becerra

Secretary

Department of Health and Human Services

200 Independence Ave SW
Washington, DC 20201

Dear Secretary Becerra:

I write today regarding a need for action to address hoarding disorder (HD) among older adults. HD disproportionately affects older adults, a population that is projected to grow significantly in coming years. As America ages, it can expect an increase in hoarding behavior, with consequences for older Americans and their families and communities. The Consequences of Clutter, a Majority Staff report released by the Senate Special Committee on Aging, discusses the implications of HD for an aging Nation. The report includes information on the problems HD poses in communities across the Nation, and it provides a series of recommendations for how the federal government can respond. I urge the Department of Health and Human Services (HHS) to review The Consequences of Clutter and to take action to address HD in America.

HD is a chronic and progressive condition that causes a person to acquire excessive possessions that are not discarded and prevent the normal use of living spaces. Studies suggest an estimated six percent of older adults have HD, compared to roughly two percent of the general population. Older adults who exhibit hoarding behavior face significant consequences for their health, safety, and ability to function. For example, excess clutter can prevent living spaces from being used as intended and give rise to problems such as falls, malnutrition, and medical complications. Hoarding behavior also places older adults at risk of isolation, as the behavior is associated with stigma and often reduces access to family and social services. Further, individuals suffering from HD are more likely to be evicted, and research suggests that evictions related to HD are linked with homelessness. Elder homelessness is already increasing significantly in the United States and is projected to continue increasing over the next ten years. If not properly addressed, HD could exacerbate the existing homelessness crisis.

As HD harms the health and well-being of older adults, it also negatively affects local communities and first responders. Hoarding conditions can bring about a variety of public health risks, such as animal and insect infestations or the broader spread of illnesses. Meanwhile, medical responses in cluttered households are complicated by “limited access and collapse potential” and often require specialized personnel and extra resources. Cluttered environments are also more likely to give rise to fires, and those fires are more likely to be severe. Responding to a fire at a cluttered household is more difficult than responding at an uncluttered household, and poses a greater danger of injury or death for first responders.

Many states and local communities have taken steps to address HD, but resource limitations are a challenge. Some local governments have formed hoarding task forces, which are shown to increase the sensitivity of how local agencies respond to hoarding behavior, increase the adoption of evidence-based practices, and improve education and information sharing. Unfortunately, hoarding task forces are frequently underfunded and difficult to maintain. Funding and resource limitations extend beyond hoarding taskforces, with community organizations and local services providers similarly reporting being unable to serve local needs. The federal government must step up to support people with HD, their communities, and their families.

The mission of HHS “is to enhance the health and well-being of all Americans,” and, as part of that mission, HHS oversees several component agencies relevant to addressing hoarding behavior. Some component agencies of HHS have taken actions related to HD, but the Department can and should do more. For example, the Substance Abuse and Mental Health Services Administration (SAMHSA) and the Administration for Community Living (ACL) currently lack programs or efforts specific to HD. Further, the Centers for Disease Control and Prevention (CDC) website includes useful information on topics facing older adults, such as preventing falls among older adults, aging in the workplace, and Alzheimer’s disease. However, Aging Majority staff were unable to identify a webpage or resources for “hoarding disorder” on the CDC website.

The Consequences of Clutter includes recommendations to improve the federal response to HD and support older adults, families, and communities struggling with the condition. The report recommends that:

• SAMHSA and ACL should develop HD-specific training, technical assistance, and other guidance for communities and providers, including guidance for establishing and sustaining hoarding task forces.

• CDC should promote greater public awareness of HD, including by conducting a public awareness campaign and maintaining a webpage on the condition. Online resources should include tips for family and community members on evidence-based intervention and harm reduction for someone with HD.

• The Centers for Medicare and Medicaid Services should explore ways to expand Medicare and Medicaid coverage for evidence-based treatment and services related to HD.

• Federal agencies, including HHS component agencies, should increase and improve tracking of the impact of hoarding behavior. Improved data collection should include better data related to when hoarding behavior plays a role in confirmed cases of self-neglect for older adults, how HD affects first responders, and when HD hinders the ability of older adults to access federal programs.

• The National Institutes of Health should continue to support research into HD, including by convening interested parties to discuss HD and older adults.

• The federal government, including HHS and component agencies, should seek input from people with HD and their family members when considering new policies and initiatives related to the condition.

The United States is rapidly aging, a trend that will require the federal government to attend to issues that it had not previously prioritized. Because HD disproportionately impacts older adults, families and communities throughout the United States can expect to see an uptick in hoarding behavior. The federal government must be prepared to respond.

Maureen, an 80-year-old with HD, shared the need for “more people out there willing to listen and help, making good suggestions, being positive.” HHS can play a role in creating a positive federal response for Maureen and other older adults with HD. I look forward to working with you to establish that response. Accordingly, I ask that the Department review The Consequences of Clutter and identify opportunities for HHS to educate, conduct research on, and support people with HD and their communities.

I look forward to remaining updated on the Department’s work on HD, as well as any barriers to progress and necessary support from Congress. Please do not hesitate to reach out to Doug Hartman with my Aging Committee staff if you have questions.

Sincerely,

Bob Casey

###